Charting a Course

Being a parent of a child with an autistism spectrum disorder can be challenging on many levels. As a mother, we wear so many hats -- referee, cook, driver, housekeeper, referee, homework inspector, playdate organizer, referee. If you have a child on the spectrum there are a whole new set of hats to wear -- researcher, therapy coordinator, case manager, advocate, OT obstacle course designer, playdate social skills supervisor, the list goes on and on.

The positions and job requirements are endless and the first major assignment begins with getting your child diagnosed. I had to convince Evan's pediatrician there was something amiss and to recommend a pediatric neurologist. Some people start with behaviorists, teachers, therapists or psychologists. From the very beginning we are all charting our own course. After receiving a diagnosis we felt major relief that our concerns were validated and we now had a direction. The problem is there is more than one set of directions and no map to be found.

What type of evaluations should we get -- OT, PT, speech? Where should we go -- private, hospitals, school? Should we see a behaviorist? Who provides early intervention services? What type of school should my child go to? Social skills? Floortime? ABA? What does our insurance cover? You mean we have to pay for all of this?!? It is completely overwhelming and there is no one person guiding you. You have to do the research, gather recommendations, interpret insurance plans and figure out what is the best path for your child. And this decision isn't as simple as, "What color should I paint the bedroom?" This decision will be what determines your child's progress and success. No pressure, right?

This is what our plan looked like: private preschool with a one-on-one aide, one hour of speech and one hour of OT a week, a two-hour social skills group once a week, behaviorist observations as needed and an annual visit to the pediatric neurologist. After two years, it was time to make a change. Evan was going to be entering into his kindergarten year and we had a feeling we needed to make some revisions to the plan. Evan enjoyed his school, which was academically challenging, full of creative programs and staffed with the most caring and nurturing teachers. But nobody was directly addressing the areas where he needed the most attention -- social skills, behavior modification and independence.

We decided to have Evan evaluated through our public school system. There were evaluations in OT, PT, and speech; psychological and academic testing, behaviorist observations, a social worker-parent interview and numerous other meetings. As the testing went on, Evan's level of motivation and compliance waned. We had to attend meetings in a building with an elevator just inside the entrance. This was at the height of Evan's elevator phobia. He could read the sign, "In case of fire do not use elevator. Use stairs." This had him convinced there was a raging fire just out of view in the depths of the elevator shaft. The entire special needs staff were able to witness his severe adverse reactions to elevators and the resulting meltdowns every time we had to walk past one. In February, they recommended the full day ABA program. After another school observation in May, they suggested he attend half day ABA and half day mainstream class with an aide (we later found out it would be a three-on-one aide...very different if you ask me). They were pleased to see how well Evan was doing. Of course he was doing well in May. He had a whole school year of acclimating to his teachers, schedule, classmates and aide. And let's not forget that spectrum disorders are very situational. If they came to observe Evan at a different time or on a different day they may have seen a different child.

We decided to enroll Evan in the summer ABA program. It was a whole new world for him -- a new school, teachers and classmates, and a completely different program. On the first day of the second week his teacher approached me at pick up and said, "Evan is supposed to attend half day ABA and half day mainstream?" I said, "Yes, are you concerned that's not the right program for him?" She was very direct and said, "I don't think that's going to work. He can't do anything by himself. He is not independent at all. He has issues with crowds and noise and that class is going to have 25 kids and a one-on-three aide isn't going to help him." It took me a few seconds to get over feeling like I got punched in the gut. I was having reservations myself and didn't actually disagree with anything she was saying. "So what are our options?" I asked "A one-on-one aide?" "Well, the purpose of an aide is to help transition into mainstream and Evan is not there yet. If he had a one-on-one aide they would be giving him step by step instructions the entire day. He wouldn't be gaining independence and he wouldn't be engaging with the class." OK, I knew where this was going. "So you recommend the full day ABA program?" She said that was her recommendation and she'd have the behaviorist and psychologist observe Evan and we'd reconvene before the summer was over.

I'm not the type of mom who hides the fact that Evan has Asperger's. I'm not the type of mom who wants him in a mainstream classroom, just so I can say he's mainstream -- like that word makes his Asperger's less severe or makes Evan sound more "normal." He is who he is and he needs what he needs. We were prepared to sign off on the new plan. We were not prepared for how that plan would change everything...

Flashing Lights

Being a parent of a child on the spectrum is a quite a journey -- a series of highs and lows and everything in between. There are celebratory moments of progress and success. There are challenging moments of regression and struggle. Then there are those other moments when autism becomes a giant undeniable force. It appears out of nowhere like a flashing neon light blinking "he's different...he's different....he's different!"

Parents who have a child on the spectrum know how to deal with tough situations. Actually we've been in so many before, we have practically developed a sixth sense. We may not have a crystal ball, but we can usually tell the future. Most of the time we can read all the signs and know just what to do to head off a melt down. We know how to prepare for every game and know which plays to put in motion at any given time. But sometimes, there are moments where all of that goes out the window and we are reminded just how hard life can be for our little ones.

We'd been coasting along under the radar enjoying Evan's progress, which was occurring across the board. He'd even started to observe his peers and become more motivated to do things independently. Of course it was the perfect time to be reminded that no matter how high-functioning Evan is, autism is always there and ready to rear its ugly head when you least expect it.

We arrived a few minutes late to Evan's classmate's birthday party. The karate instructors had the kids lined up and participating in games when we walked into the backyard. Evan refused to join in and insisted on sitting to the side and just watching. When the karate lessons were over he played with some of the other kids on the swing set. The playing was a mash up of scripting (Evan), teasing (other kids) and regular five year old play. It was better than watching Evan stand in the corner and talk to the plants -- which is what would have happened a year ago. I'll take what I can get. I turn around and see Evan start to run to the sliding glass doors and squeeze by before I can catch him. I enter the empty house and grab Evan's hand before he can climb the stairs. "The party is outside, Buddy. We're not allowed inside the house," I tell him. He starts whining and manages to pull away and start clamoring up the stairs. I know what's happening. He remembers this house from a playdate a few months prior. He desperately wants to go to the birthday boy's room and find whatever book or toy he has pictured in his mind. I explain, I insist, I bribe and nothing works. His whining has developed into a full on meltdown. We walk down the stairs and I hold Evan's hand as he fights me- kicking and screaming and yelling. Another parent walks by and asks, "does he want cake?" "No, he doesn't want cake! He's the only child who didn't eat cake. The only child who didn't participate in the karate games. The only child who can't see when other kids are teasing him. And the only one having an epic melt down in the middle of this party!" Well, that's what I wanted to say. Instead I just shake my head and walk Evan out to say happy birthday to his friend and thank you to his friend's mom before escaping the stares and getting the hell out of Dodge.

That neon flashing light damn near blinded me that day. "HE'S DIFFERENT!" it blinked blatantly. Yes, he's high functioning. Yes, he's doing well. But he is different and don't you forget it the blinking sign could have read. A birthday party where all the kids are having a blissful time is where my kid struggles. The environment is loud and abrasive, the surroundings unknown, people asking him to do things he's unsure of, new faces and noises and rules he's not used to. "Don't forget who he is," I remind myself on the car ride home. When it's smooth sailing I can easily let myself be convinced that we've escaped autism. But we haven't. It's always there and I can't forget that no matter how well Evan is doing, he will always have Asperger's Syndrome and I'll never be able to predict how it will manifest.

These flashing light moments are the only times I feel sadness. It sneaks up on me. I'm not ready for Evan's struggles to be center stage for everyone to judge. I can never be emotionally prepared for those moments. We pull into our garage and I take Evan out of the car as I cry. When he was three years old my crying didn't even register on his radar. At four years old he thought it was funny and would ask me to cry so he could have a good laugh. But now he sees the tears and he hugs me. Not the scripted flopped arms over my shoulders, but a real hug so tight I can feel his little arms around me. He says, "Don't cry. Don't be upset." He takes my face in his hands and looks me in the eyes. With authority he says, "You have to count to three and calm down." OK, the last part was from a show, but still! It was just what I needed. A reminder of the progress he's made, the feelings he can recognize, the empathy he has and his ability to express it. Everyone is entitled to a bad day, a moment of pity or a flash of sadness. I'm so lucky my boy could look me in the eye and pick me back up.

Evan Decoded

Evan's progress used to be dramatic. One day we'd wake up and it was as if the Asperger's cloud lifted a bit and Evan was noticeably more present and engaged. Now he progresses differently. I like to call it "slow and steady." It's not as remarkable, but I hear that's how you win the race anyhow. These days he's improving in little ways across the board. My favorite place to see these changes is his language skills. Those tiny gems of original thought are popping up more often. He's understanding his emotions better, expressing himself more and we are starting to decode some of his behaviors that have eluded us for so long.

About a year ago, when Evan was four and half years old, his language skills started to improve. He spent a great deal of time working on his auditory processing and pragmatics during his speech therapy sessions (and still does). He was able to answer certain questions and it was as if we could finally start to unravel some of the behaviors that had mystified us over the years. Since Evan was about a year old he had an almost Pavlovian response to pillows. If he came in close enough contact with one (no matter what room or what time of day) his thumb would go in his mouth and his eye lids would droop with heaviness. He loved his bed and at night he would dive under his pillows to go to sleep. We knew there was a sensory component to his love of pillows, but weren't sure what it was. Did he like to go under the pillows because it blocked out light? Did he like to feel the pressure of the weight on his body? Did he like how the fabric felt cold against his skin? I thought it might be the cold feeling, but I never knew for sure. I often asked him, but never got an answer. One day I finally did. "Evan, why do you love your pillows?" I said, exaggerating the inflection of my voice to help him tune in and process the words. Much to my surprise, he took his thumb out of his mouth only long enough to say these three words: "It feels cold." I called my husband, Steve, into his room and we celebrated those three words like they were a major milestone. For us, that's exactly what it was. It was the first time he could explain why he does what he does. No speculation or hypothesizing, just our son giving us a glimpse into his thoughts.

Every night Evan would crawl into bed and we would choose a few books to read. Occasionally, he would have a very, um ... strong reaction to certain books. A peaceful quiet bedtime could turn into tears and screams if we tried to push a book that he had rejected. We didn't know exactly why he was having such adverse reactions to these books. Maybe he wanted to read something specific and was having a hard time telling us what that was. There was one particular book that Evan was terrified of: Rhyming Dust Bunnies by Jan Thomas. I had recently discovered how much disclaimers, explanations and preparations helped Evan. Sometimes one subtle statement could ease his anxiety. I guess this night I was feeling particularly brave because I went to Evan's bookshelf and picked up Rhyming Dust Bunnies. I told him it was a silly story and I wanted to read it. He didn't have to listen, but I was going to read it quietly to myself. He put up a fight, but I started to read anyway. I whispered the words and giggled my way through the first few pages. At this time Evan was still struggling with sensory overload when it came to loud noises- especially if he could anticipate them coming. I noticed the words on the page were written in a large font and there were lots of exclamations points. I started to realize that my little reader probably thought that this book was loud, abrasive and to be avoided at all costs. When I got to page six, Evan quickly covered my mouth and said, "Not loud! Read it pianissimo (a nod to his Little Einstein days)." And there on page six was the trifecta that caused Evan to finally show me why this book was his mortal enemy: large font, an exclamation point and ALL CAPS! We got through the book that night when Evan realized the dust bunnies were not going to yell at him and he insisted on reading it every night for the next three weeks.

Evan scripts -- a lot. He is always reciting dialogue from shows and movies. In the car, he loves to listen to movie soundtracks and songs from his favorite Nick Jr. shows. During every car ride there is a moment where Evan insists that I restart a song from the beginning. Often we are on our way to school or therapy and I don't want him to exhaust himself with a meltdown, so I oblige. Yes, I subscribe to that lovely little theory called "Choose Your Battles." This was another situation where I wasn't exactly sure why Evan would be so insistent. Since he was getting better at answering questions, I decided to push the issue. He asked me to restart a song and I turned the radio off. I said, "I will, if you tell me why you want me to restart the song." I had to repeat the question a few more times, but finally he said, "Because I didn't sing a part." Aha! I realized he was not only singing along, but also replaying the scenes in his head. I tested this theory when he was listening to an instrumental song from the Beauty and the Beast soundtrack. He was reacting to the song as if he was watching the scene play out. I turned to Evan and asked him, "What's happening?" He said, "Gaston and the men are trying to kill the beast!" I guess the movie reel never stops playing in Evan's mind.

This theory was further proven when Evan started to blink intentionally and excessively. It came about one day and didn't stop for weeks. It would happen all day long and was especially noticeable when we were sitting at the dinner table and there was nothing specific that he seemed to be reacting to. I finally pressured him to tell me why and he said, "because I don't want to see something." The next time I asked, he said "I don't want to see Evil Emperor Zurg (from Toy Story)." So the scripting wasn't just happening when he repeated dialogue. It was happening in his mind all the time.

The loss of a pet is inevitable, but never easy. Our dog Riley had to be put down a few months ago due to cancer. We told the kids she was very sick and had to stay with the veterinarian. We knew death was a topic that had to be broached sometime, but felt they were still too young to get the concept. With every question about Riley my heart ached a little more. One night Steve called me into Evan's room, where he was putting him to bed. He said, "Tell Mommy, Evan." Evan whispered in the saddest voice I'd heard coming out of my usually joyful little guy, "Where's Riley? I miss her. She needs to be here with us." He then reached up and brushed a tear from his eye. This was the very first time Evan cried from sadness and not fear, frustration or anxiety. It was heart breaking, but also a breakthrough.

This year we have made improving Evan's fine motor skills a priority. It's his final year of preschool and we decided it was a good time to strengthen his writing and drawing skills and more importantly, get him to like it (or at least not despise it). Between his school homework, speech homework and our new fine-motor schedule (20 minutes a day of tracing, cutting, drawing, writing or art) we've been spending a lot of time at the kitchen table. Putting up a schedule, using rewards, motor breaks and applying tricks to get him more engaged all helped Evan tolerate homework more. One Sunday, we were working on his butterfly book. He had to trace numbers, color the butterflies, cut the pages and then staple them into book form. I'm not sure how long it took his classmates, but Evan finished it in about four sittings. He had just finished watching the movie, The Polar Express, when I reminded him it was time to finally finish his butterfly book. He was reluctant (surprise surprise), but I somehow coaxed him to the table. He sat down looking completely uninterested. I knew I'd have to use one of my tricks to get him engaged. I started singing for each number he was on. Well, since I'm tone deaf it was more like rapping. Whatever it was, it was working. Evan stopped whining and went from slumped over to sitting up. Instead of a prompt every two seconds to hold his crayon correctly and keep working, he was actually just smiling and coloring away. When we got to number seven, he started singing -- slowly and quietly. It was to the tune of "Christmas Comes to Town" from Polar Express. He sang "Seven, number seven, my name is Evan." It was so adorably sweet and authentic. And then it got better. He turned to me and sang, "Mommy is my girl. She is good. I love her. She's my Mommy." And while he sang he caressed my face and arm. My throat constricted, but I held back my tears because I wanted to see where else this song was going to take us. He continued to sing about how he loves his house, Earth and his sister Lia (who he also referred to mid-song as his girlfriend...have to work on that concept in the future). His animated scripted voice was replaced with this gentle sing-songy intonation. The lyrics were truly expressive. In fact, that moment was Evan's most genuine display of emotion ever. Evan would say, "I love you," but it was like a boomerang. If I threw it out there he'd send it back. This was entirely different. The words I heard were uniquely his and with those words, for the first time, I truly felt his love.

This is an exciting chapter of Evan's progress. His emerging language skills are like a key that has opened a door to show us more of our son. We are finally learning the reasons behind so many of Evan's habits and behaviors. We're understanding his personality on a whole new level. We've been so focused on getting Evan to be more in our world -- it is such an unexpected and amazing gift when he shows us more of his.

Twenty Minutes

A new blog post! Yeah, it's been awhile. The truth is I have been avoiding this moment for some time. I have reams of notes for five different blog posts. The problem is I promised myself I wouldn't write any of them...until I wrote this one. Today something beautiful and amazing happened with Evan. I ran to my computer to jot down some notes. I couldn't wait to write a post about the break though. But then I remembered the promise I made to myself. So, that post, with all it's touching moments of progress and joy, will have to wait. This one has to come first.

I've put four months in between that day and today. It still doesn't seem like enough. I mean, who in their right mind would want to revisit the most heart wrenching moment of their life? To write, I have to remember. To remember, I have to relive.

It had happened before. Two minutes at the water park. A minute in the hallway at school. But this was different. It was a beautiful October day. I was running errands in town with my best friend, Jackie. The kids were at home with our part-time sitter, Wendy. Evan was still obsessed with riding his bike and went for several bike rides a week. If it was two adults (my husband and I over the weekend or the sitter and I during the week) we would take a longer bike ride around the neighborhood. If it was just Wendy, she would take the kids on their bikes down the block and along the path that led to the field of the school behind our house. It was a quick jaunt, but they loved it. It was also quick enough that I felt comfortable with Wendy taking them on her own. She had been taking them a few times a week for about two months. But this bike ride would turn out entirely different.

Lia, Evan's sister who had just turned three years old, insisted on taking her tricycle instead of her bike. This one seemingly inconsequential variable seemed to set off the whole ugly chain of events. A bike can manuver over bumpy sidewalks easily. A tricycle - not so much. Lia kept getting stuck and Wendy had to turn back to help her over tree roots that jutted out and made for rocky terrain. After each time getting stuck, the space between Evan and Lia grew larger. She yelled over and over for Evan to wait, but he didn't. Then he saw a deer and off he went. Wendy went back and grabbed Lia, abandoning her tricycle. She chased after Evan, screaming at him to stop. He turned a corner and was out of sight. She felt she couldn't run fast enough carrying our 40 pound daughter. She yelled for help and a couple students who were practicing with the school band ran over. She asked them to watch Lia and she left to go find Evan. Wendy called 911 and then called me.

Jackie and I were picking up some clothes that were being altered and chatting with Sam the tailor (when you're 5' 3" you get a lot of clothes altered and you spend a lot of time with the tailor). When I saw my sitter's name pop up on my cell phone, I knew it wasn't good. She was hysterical. I only remember hearing the words "Evan," "bike," and the worst word of all - "lost."

I ran out of the store towards my car. I realized a few seconds later that Jackie had been yelling to me. Was she asking me a question? I turned to look back and she was gone. But I saw Sam standing on the curb. He was looking around, stunned, probably wondering what he should do. I got in my car, crying, shaking, fumbling with my cell phone. Since I only processed three words from the call with Wendy, I had no idea if she had called the police. I dialed 911 as I honked and weaved my way through traffic. I was driving like a mad woman. Well, in that moment that is exactly what I was. In between distraught sobs, I told the dispatcher what had happened. I gave location details and described what Evan was wearing. And then I told him that my son was autistic. The dispatcher said, "we'll call his name and maybe he'll come to us if he's hiding." I screamed, "He's autistic! He will not come if you call out his name!" The dispatcher said, "maybe he walked to a friend's house." I screamed, "He's autistic! He does not walk to friends' houses!" The dispatcher tried to keep me calm, but my level of hysteria grew at every asinine thing the dispatcher said. He tried to tell me that screaming and driving like that was unsafe. Did he want me to go the speed limit and calmly follow traffic patterns? Then I started to think about the recent "stranger danger" incidents that had occurred in the area. I pictured my oblivious naive little boy happily climbing into a car - never to be seen again. If my maniacal driving could have gotten any more maniacal, it probably did. I wanted another dispatcher to call Wendy and stay on the line with her. I tried to retrieve her cell phone number from my phone. The dispatcher must have known that my crazy mental state combined with my demented driving and messing with my cell phone would be a bad situation. He told me to pull over and calm down while I got the phone number. I yelled, "you're fucking crazy if you think I'm gonna fucking pull over while my kid is lost. I am going to fucking drive home and find my fucking son!!!!!" Or something like that.

While I was on the line - I heard him talking to another dispatcher. As I turned onto my street, he told me the sitter found Evan and he was with her in our house. I parked my car in the drive way, but did not go in. Somehow I just knew Evan was not inside. My neighbor, John, came outside and followed me as I ran to the corner where four police cars were parked. I followed the path to the field behind the school. Four or five police officers rounded the corner and walked towards me. Jackie was there with Lia. Apparently, she had been asking me if I wanted her to drive. When I didn't answer she realized she should take her car because it was parked on the other side of town, closer to my house. She pulled over where she saw the police cars and found Lia playing with some of the kids from the band. Thank God for them.

John and his wife Jen took Lia back to their house as I approached the first officer I saw. I asked him, "where's Evan?" He said, "at home with the mother." I said, "I'm his mother!" I called Wendy. Through labored breaths and tears she said, "I have Evan, can somebody come and get me?" She physically couldn't walk. I told the officer to send somebody to get them. He tried to convince me that she was at the house. I yelled, "I am on the phone with her! She is sitting on a sidewalk! Go and get them!" During this time a different officer drove by and saw Wendy sitting on the ground with Evan and asked if she was OK. She begged the officer to drive them to where we were.

I spotted a police car pulling into the school parking lot. I ran across the field as Wendy and Evan (still wearing his helmet) ran towards me. I grabbed him and kissed him and held him- probably too tight for his liking. I don't remember what I said. I just remember walking across the field and not wanting to put him down - ever.

Wendy was a mess. She must have had a full on panic attack and well...she peed herself (which is the least she could do for losing my kid). After getting all the information, we parted ways with the officers. I think I thanked them and may have apologized in some capacity. We walked down the block and went to my neighbors house. I tried to talk to Evan about what had happened. He didn't really get what all the fuss was about. He seemed pleased that he got to ride in a police car.

I let Evan and Lia play with the neighbor's kids in their backyard. Jackie and Jen stayed while I went inside my house to see if Wendy was OK (and give her some pants). We were both still very upset and I told her to get some water and sit down and that I would be back in a few minutes. At some point I had given Jackie my phone and told her to call my husband, Steve. She had been calling him repeatedly, but kept getting his voice mail. His train had been stuck and he had no cell service. He had no idea what had gone on. At least he got to hear the story with the happy ending already attached. The kids played as Jackie, Jen and I recounted everything that had just occurred. I called Sam to tell him Evan was OK. He had been waiting for that call. I scrolled through my recent calls and checked the time that Wendy first called me. "Twenty minutes ago? That's not possible," I thought. I checked three more times. The whole ordeal had only lasted twenty minutes. It felt like so much more. Twenty minutes, but it probably took that many years off my life.

Eventually Jackie went home and Jen helped me get the kids settled inside. We sat down with Wendy at the kitchen table. I asked her to start at the beginning. I tried to piece everything together, not that it would ever be enough. Jen went home and Wendy's brother arrived to pick her up. She was still visibly shaking and wasn't okay to drive on her own. I stood alone in the kitchen while the kids played in the next room. I leaned on the counter and had a good cry. I noticed the time and realized I had to make the kids' dinner. They were probably hungry and bed time was fast approaching. Life goes on. But it will never be quite the same.